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Posted: 28 May 2007

Irish patients volunteer in the fight for new cures

Irish patient volunteers and researchers at the UCD Mater Clinical Research Centre (CRC) are working together to help find new and better treatments and cures for a range of diseases currently affecting thousands of families in Ireland.

The UCD Mater Clinical Research Centre, which was established in 2006, currently supports more than 40 research projects. Among the research trials are studies of stroke, cancer, HIV, lung disease, diabetes and retinal transplantation. The current projects are outlined in the Centre’s annual report for 2006 – published today – and include details of research breakthroughs including the identification of a gene that causes stomach cancer and the use of novel medical devices for sufferers of chronic lung disease.

Each week over 50 patients attend the clinic and participate in the research trials. Almost 2,000 patients became involved between April and December 2006. These figures tell a strong story of how the work at the centre is having a considerable impact on the patient experience within the Irish healthcare system.

“Working with patients and their families, we are searching for sharper biology-based definitions of disease so that we can develop more effective treatments,” says Dr Peter Doran, Director of the UCD Mater Clinical Research Centre.

“In clinical research we carry out a range of studies. We analyse blood and tissue samples to see what a disease does to the cells. We carry out clinical examinations and ask participants to answer questionnaires in order to learn more about specific diseases and their symptoms. And, we compare responses to different medications, treatments and medical devices. The more patients who participate, the better our understanding of the pathogenesis of disease.”

Example 1: Medical devices for lung disease patients
By 2020 lung disease will be the third biggest killer in the world, responsible for the deaths of over 6 million people annually.

Although often thought synonymous with smoking, many cases of lung disease are idiopathic (their cause is unknown). Dr Jim Egan at the UCD Mater Clinical Research Centre leads a team of researchers investigating possible underlying causes of and links to pulmonary fibrosis by studying cells provided by patient participants and their families.

Over the past two years, fifty of Dr Egan’s patients have chosen to become involved in research into new drugs or new medical devices for lung disease. “Irish patients have access to the latest novel emerging therapies based on the research carried out at the UCD Mater CRC,” says Dr Egan. “Following initial trials undertaken here, twelve Irish participants are among the first 76 people worldwide to have fitted a new lung valve device which removes excess air from the lungs and consequently gives patients enormous relief.”

“I am eternally grateful to my patients who choose to take part in the research,” says Dr Egan. “Their willing participation helps us deepen our understanding of what causes lung disease and how we can best treat the symptoms.”

Example 2: Dublin City HIV Cohort Study
A group of over 700 patients suffering from HIV volunteer to help with the genetic investigations taking place at the UCD Mater Clinical Research Centre, in collaboration with St James’ and Beaumont Hospitals. Every 6 months the patients visit the centre to have their clinical, laboratory and DNA data recorded and stored.

Every year more than 3 million people worldwide die from HIV/AIDs. Although Ireland has been spared most of the ravages of this infection, it nevertheless continues to place an undue burden on healthcare since infection leads to a chronic medical condition with numerous complications requiring lifelong treatment and expensive medication.

The leader of the Dublin City HIV Cohort Study, Professor Bill Powderly, Head of UCD School of Medicine and Medical Science, explains that the Dublin patient cohort is particularly important to research in the area. “HIV infection in Dublin is essentially three separate epidemics – sexually transmitted disease in Irish patients (mainly homosexual men), infection in drug using patients, and infection in an immigrant population from Sub-Saharan Africa,” he says. “Sampling from three epidemics allows us to determine if there are differences in the natural history and the complications associated with HIV.”

Among the major goals of the study are to examine whether different strains of HIV affect progression or response to treatment and to examine whether a patient’s genetic makeup can influence side-effects of treatment.

Example 3: North Dublin Population Stroke Study
Every year, stroke causes more deaths in Ireland than breast, lung and bowel cancer combined. Year on year, it accounts for 9% of all deaths in the country. And it is estimated that there are more than 30,000 stroke survivors in Ireland today who live with the various levels of disability that stroke leaves in its wake.

The North Dublin Stroke Study is a collaborative research study involving doctors at the Mater, Beaumont and Connolly Hospitals, North Dublin GPs, the Irish College of General Practitioners, and UCD. Co-ordinated from the UCD Mater Clinical Research Centre, more than 550 Irish stroke patients have volunteered to provide medical and blood test information so that the research team can best identify who is at high risk for stroke.

”This research demonstrates the powerful advantages of combining a state-of-the-art health research facility with the expertise of teams of doctors working together in the hospitals and community” says Dr Peter Kelly, Consultant Neurologist, UCD and Mater Hospital, who leads the North Dublin Population Stroke Study. “The study will directly improve health services for Irish stroke patients by informing the National Stroke Strategy. It will also allow us to better prevent stroke by identifying patients at high risk and targeting treatment to these patients to prevent stroke from happening”.

The next step is to use the knowledge gained through the genome project to begin to search for genes causing brain haemorrhage and other types of stroke. “The genetic information received from patients is shared with scientists worldwide. This allows them to compare and contrast all the available genetic data on any one illness across the entire globe,” says Dr Peter Doran, Director of the UCD Mater Clinical Research Centre.

Doctors, nurses, technicians, scientists, patients and their families are continuing to work together at the UCD Mater Clinical Research Centre to strive towards the common goal of developing new cures for chronic diseases. Month by month, the numbers of patient volunteers are growing at the unit. And stronger partnerships are being developed with all the stakeholders involved in Irish healthcare positioning the unit at the centre of translational medical research in Ireland.

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